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"Gray-Area" Lupus Newbie

Hi All!

I wanted to introduce myself. I have been recently diagnosed with "Gray-area" Lupus. My symptoms started 2.5 years ago. I was initially diagnosed with Fibromyalgia (sound familiar?), went to 11 different specialists in search of a diagnosis, ended up at a well-known teaching hospital and received a UCTD diagnosis. Was put on Plaquenil (my best friend), and was in remission for about a year.

Two weekends ago went on a day-trip with my hubby on a beautiful sunny day and walked around several small cutesy towns. Next day.... BAM! It aaallll came back plus malar rash. To make a long story short, my arthritis doctor permanently referred me to a lupus doctor. After an initial pred taper, I was given a Triamcinolone (sp?) injection, and now I have a cold.

I ask my doctor if he thinks I fall into the "Lupus" category. He said, "Well, the terms used for diagnoses are basically for research purposes, but the treatment is the same." He said I have UCTD that points to Lupus because of my increased immune activity and because I have some Lupus "markers". He said I'm in a gray area. To me, I think it's obvious. I have looked at diagnostic criteria for Lupus and there ya' go.

Really, the name of what I have doesn't matter because it is true that my treatment is the same regardless of the name. If we can't get the flare under control, I may be put on CellCept. If I continue to have joint and muscle pains - Methotrexate and so on and so forth.

Glad to be here. I have some questions to post that I hope someone can answer for me!

Hi PBeth! Sorry you are sick, but glad you found us. There is lots of good information here!

Sounds like you have attentive doctors who are willing to treat you and look for solutions - that is so important. Sometimes it takes a while to find the right balance of medications for a person - everybody's Lupus case is different, and of course it changes through your life. Treatment is always an ongoing process, not an "answer". Be as patient as you can, and keep a close, honest relationship with your doctors.

And for what it's worth, I have had great results from Plaquenil and Methotrexate - and almost NO side effects (I have been on Plaquenil for a couple of years and Mtx for a year now). We are considering adding a maintenance dose of just 5mg Prednisone for the next 6 months to see if it bumps me up a bit more with the brain fog and fatigue (neuro symptoms bother me most), but we're hoping I won't always have to do that.

I eat well and exercise, drink lots of water, listen to my doctor, and so far have no problems with the medications. My quality of life is SO MUCH BETTER than it was a few years ago, I can't even believe it.

You have to take this stuff day by day, listen to your body, discuss things with your doctor, and BE PATIENT. Give medications time to work. There's no cure yet, but I am always hopeful. Until then, thank goodness we DO have a variety of treatment options to try!